Showing posts from May, 2016

This is why we are all missing

 Today is a day to raise awareness of the millions missing from everyday life due to the disease Myalgic Encephalomyelitis.  It seems to me that the reason this is so is because of :  the missing medical input  the missing medical respect  the missing truth of this disease, which has been deliberately wrapped up for far too many decades in a label of fatigue packaged by a powerful psychiatric lobby, to mean something very different from the incurable Neurological Disease that ME actually is. What is missing from my life and so many others, is a specific test to identify my illness, even though one was developed in the 1980's, now abandoned, with nothing better on the table, allowing enteroviral ME to slip into the annals of history, with those suffering from it too ill and overlooked and dismissed to mount an effective challenge. What is fundamentally missing, in the absence of this test, are specific and safe, reliable diagnostic criteria, adopted universally, t

Oh river

One aspect of being a carer in our situation is being a fighter : advocating, raising awareness- especially of the disease ME that is in enormous danger of being completely buried under an avalanche of CFS that will take decades to sort out, if ever. The other, maybe more important aspect is courage, especially the extraordinary courage it takes to be creative, to discover and express one's deepest real raging, tender, crazy, joyful, mysterious, wonderful self, to rise above all constraints, whether in a song, a poem, a painting or the sight of a tree, a daisy maybe, in a cracked wall, wet in the rain, alive, innocent in all its glory, the wind in your face. My journey has led me to create Stonebird, at the same time I have always written songs, stories; I have a children’s book I long to finish. I have neglected the garden and our overgrown allotment. I need to get digging, so my imagination can run free, above all I need to do this, to be much more present to

Why the separation of ME from CFS is long overdue

Myalgic Encephalomyelitis, a neurological disease with multi-system dysfunction is continuing to disappear from view, lost in a fatigue focus that does not clinically represent the reality of this severely disabling chronic disease. There should, you would think, be no compromise on identifying and separating Myalgic Encephalomyelitis from other conditions and recognising the need for a full medical service with a biomedical pathway, for people with Myalgic Encephalomyelitis (ME). This is sadly not the case and that has profound implications for those people who have ME especially the most severely affected, who are so isolated as to be almost invisible to health services, social services and society generally, too ill to engage with them.  It is unlikely that anyone outside the situation really know what life is like for people with Severe and Very Severe ME, who are house and or bed bound, unable to interact in a normal way and separated from ordinary life by acute en